A few weeks ago I called my young friend to interview her for this post. The last question I asked her was this: “When you hear the phrase ‘living well,’ what does that mean to you? What do you think it looks like to live well?” I wasn’t sure she would be able to quickly articulate an answer that question, but after a few seconds she responded:
To live in God’s image.
Wow. What 17-year-old gives an answer like that? MaKenna Maskey does, and her answer wouldn’t surprise anyone who knows her. She has no doubt that God created her just the way she is, and He wants her to live in a way that shows others who He is.
Nearly 18 years ago, MaKenna’s aunt Jenny called to tell me she had a new niece. The next day, the phone rang again. This time the news was grim. MaKenna had turned blue, so she was being airlifted from the small hospital in Mexico, Missouri, to Cardinal Glennon Children’s Hospital in St. Louis.
MaKenna’s diagnosis was Hypoplastic Left Heart Syndrome (HLHS). You can look it up here, but to put it simply, the left side of her heart was undeveloped. The right side had to do all the work, which it would only be able to do for a very limited amount of time without intervention.
This wasn’t a condition that would resolve itself on its own, so MaKenna’s parents were told they had two options. 1) Wait for a heart transplant. 2) Opt for a series of three surgeries that were still fairly new and experimental.
A decade earlier, infants born with HLHS were not expected to survive, even with surgeries. Thankfully for the Maskeys, the procedures and after care had been refined enough that there was hope for MaKenna.
Lois Ann and Ryan opted for the surgeries, since there was no guarantee a new heart would be available in time. The first surgery took place nearly immediately, followed by another at five months.
MaKenna had the final surgery when she was four years old. Her parents noticed a marked difference in her appearance and energy after that. Though they knew she still wouldn’t be able to do everything most other kids could do, she now had the opportunity to live a full life.
And live a full life she has. She has always had a positive spirit, she cares about others, she openly shares her faith, and she knows life is bigger than her disorder. When I asked how having HLHS has shaped who she is today, she had another impressive response:
“My experience with HLHS has given me more opportunities to give back to those who’ve helped me which, in turn, has made me realize the importance of helping others.
“It has also made me a more positive person; in my opinion it’s better to just embrace everything rather than stress about things we can’t control. All in all I know God has a plan for me. He gave me this disorder for a reason, and because of it I’ve realized although I will be limited, those limits don’t have to define my whole being.”
Those aren’t just empty words. MaKenna doesn’t let HLHS define her. Sure, there are things she hasn’t been able to do, like play sports, do anything that puts pressure on her chest, or drink caffeine. But there have been plenty of other things she has been able to do.
At school, she is involved in FBLA, National Honor Society, Art Club, and SpecDra (speech and drama club). She had been in two plays: Snow White and Murder’s in the Heir.
MaKenna works at the public library in a town near her own in central Missouri. “It’s really fun,” she says. “I get to talk with the people who come in and help them out with the computers.” She also shelves books and organizes things. “I like organizing, so it works out.”
She also serves others in many ways. She has been involved in volunteer efforts at Cardinal Glennon Hospital, including helping stock the parent pantry and getting kids at her school to write Messages of Hope. “I would have people write anything—a positive note, Bible verses, or a letter—that we’d send to the hospital for kids and parents to read.” She helps organize the NHS-sponsored blood drives at her high school. For several years, she tutored kids in her aunt Jenny’s first grade classroom. And she has volunteered with the children’s ministry and VBS at her church.
This past November, she had the opportunity to travel to Texas with her brother, aunt, uncle, and others from her church to volunteer in an Operation Christmas Child Shoebox Processing Center. For many years, she has been involved with OCC at the local level by helping younger kids shop for items for their shoeboxes, organizing donations, and filling boxes. She really enjoyed being able to follow those boxes to the next stage in their journey at the processing center.
MaKenna will graduate from high school in May and plans to attend college at Hannibal-LaGrange University in the fall. She’s not entirely sure what career path she wants to take, but she’s thinking possibly social work or psychology. It seems to me like that would fit in very well with her desire to help others.
She is also passionate about letting others know about HLHS. She wants to spread the word so others can understand it and so they can give money to fund more research for children with congenital heart defects. A few years ago, she created this video to increase awareness and drive donations.
When you see MaKenna today, you wouldn’t know she has a heart condition, but it’s still an everyday reality for her and her family. Her mom says, “She looks healthy but is living with half a heart and two leaking valves. She needs a lifetime of care and medications and most likely will need more medical intervention. We are so blessed for every healthy day!”
Her family is blessed, and so are the rest of us. MaKenna, you’re an inspiration! Thanks for showing all of us how to live well and serve others.